Service User Groups

Number of people: varies but for a good discussion with people with dementia, likely to be a smaller, rather than larger group. 

Pros and cons

Useful for:

• encouraging people with dementia to feel confident to speak up about what matters to them and to share their ideas in solutions-based conversations.
• members, including with dementia, may build up new knowledge about the sorts of things they are being asked about.
• building positive relationships with the managers/commissioners who use the groups.
• virtual meetings may be welcome and low cost additions in between face-to-face meetings.

Disadvantage and risks:

• members are 'volunteers' who share some characteristics and preferences that enable them to participate. Consider when you should enlarge your sample group to seek feedback and data about the experiences of people who are not part of the group, to get a broader and richer picture reflecting wider variance of service user needs.
• fixed-term memberships may be daunting for people with dementia, who may feel a pressure to be well enough to reach the end of the period.
  • More flexible and open membership, may both seek commitment for a period of, say 6 months, and take pressure off participants.
  • Flexible membership may help new members with dementia benefit from taster experience to decide whether they are capable of participating, can avoid new members feeling the group they are joining is a clique, and can preserve levels of skill and confidence in sharing as part of the culture of the group (which may otherwise be lost and take several meetings to rebuild with completely new membership).
• people with dementia may find it hard to keep up in concentration and contribution with people with other types of disability in mixed service user group meetings that have multiple agenda items.
• virtual groups may face particular challenges including difficulties with connection over secure healthcare IT systems, and some people with dementia being confused/frightened by video connection.

Costs: vary. Depending on setting there may be travel, support staff, refreshments, Skype/video conferencing, hotel and venue hire costs to consider, as well as meeting administration and analysis of results of group discussions.

Timing: varies. Discussion items of around 15 to 20 minutes may be complemented by relaxed social activity. 

Preparation

Setting up a service user group:

• Work with service users with dementia to agree
  • the purpose of the group, its terms of reference and the roles of its members.
  • how and when new members can join and the maximum group membership at any time. Agree recruitment process and any posters or web content to be used in this. Many people with dementia lose confidence after a diagnosis and may be reluctant to put themselves through a competitive process, so consider ways to encourage people to volunteer, such as being asked by staff or other people with dementia who express confidence that they would be good in the role and enjoy it.
•  Agree your agenda with service users - and once recruited, group members, working together with staff.
• Identify which staff should attend and when - it can help to show the group that the service takes them seriously and it can help staff with ability to implement solutions to have first-hand experience of group discussions.
• Agree how the group will feedback on its activity to other service users and staff.
• Checklist of things to consider telling people due to attend your event. 

How to deliver activity on the day

Ensure you have water, tea and coffee (or whatever drinks the people prefer) close to people during the session

• consider having biscuits and fruit available 
• ensure there is someone to meet each participant at the venue/the station etc as agreed
• ensure the way to the toilets - and out again - is clearly signposted (see our dementia-friendly signage)
• provide name cards and badges
• provide communication cards as a constant visual permission for people to let you know of any needs to help them participate during the session.
• remember to use informed and process consent - introduce yourself and what will happen, including how responses will be recorded. Check everyone is happy to go ahead. Ask people to sign consent forms. 
• suggest ground rules or group contract: one person speaks at a time, respect each other even if you disagree with someone else's opinion or idea, there are no right or wrong answers

• use a flipchart to write down key words and phrases people use to help them know they have made points they wish to raise.

• Chairing/Facilitating: Manage the group discussion so that everyone gets the chance to join in
  • Agree with the group if you can pause from time to time
    • to ask each person if they have understood what's been said and whether they would like to say something without expecting that they must say something. This can help quieter members (such as people who may find it more difficult to speak) have the opportunity to express themselves and help more anxious members to feel reassured that they will have the chance to speak.
    • to take a break, including offering a drink, especially in hot weather. 
       

At the end of the meeting

• Ask people if there is anything else they want to share and check how people are feeling, in case anyone wants any support with, feelings or issues prompted by the conversation.
• Reflect back on what people have done and thank them for their contribution.
• Tell people what will happen next and when you will update them about how their comments will be used.
• Check everyone has all their belongings, coats etc.
• Check everyone is OK to get home safely. 

After the activity
 

As soon as possible write up your record of the session, using people's own words where possible, together with any observations you feel relevant. Example record of group meeting. 

Follow our guidance on analysing your data to guide you about 'coding' any feedback responses into themes. Example of group discussion 'coded' into themes. 

Real-life examples featured in this resource

Co-production, learning disability and the Dementia Statements - Macintyre

Dementia Voices report - Essex

Helping more people live well in the community, Essex: groups

Peer befriending in a range of settings - Re Connect, Gloucestershire

Service innovation to close gaps in provision: Dementia Allies, Canterbury

Signage and decoration at Shrewsbury and Telford hospital

Supporting self-management: improving 'The Dementia Guide'

Using communications technology to connect people with dementia: 3NDWG

Useful Links
 

National Association for Patient Participation